How to show up for Disabled People on #DDOM2019 and every year to come.

A photo of Hassani Jamil Cambpell, a 5 year old African American boy wearing a blue satin graduation cap and in 2009.

Today is Disability Day of Mourning. A day when our community recognizes the deaths of people with disabilities at the hands of family members, caregivers, and people who were supposed to care for them. It’s a genocide that takes place daily under the auspices of ableism that defends (and frequently cannonizes) its perpetrators and erases its victims. This is a day when we gather as a community, around the world, and read the names aloud of those who are no longer with us.

80% of disabled people grow up in families where it is believed they are the only one like them. Since we as children get our immediate sense of self from family, for many people with disabilities, we grow up with the knowledge that those closest to us may think of us as broken, may have lower expectations for us, or in some cases, may threaten to hurt us, and follow through on those threats. For a long time this wasn’t a topic talked about even in our community. Thanks to folks like Zoe Gross, Lydia Brown, and groups like the Autistic Self-Advocacy Network we’ve pulled the window dressing back on a display of one of our community’s biggest, most shameful atrocities. And as someone who is a progressive, and has the privilege of belonging to a part of the disability community that this often doesn’t happen to (believe me, little people have our own messes), I feel like I have a responsibility to illuminate this issue for my peers.

Every time I bring this up in non-disability centered progressive spaces I get the same response. First, shock that it’s a thing. Outrage that folks haven’t heard about it. But a majority of times the outrage is limited to wide eyes or a shaking of heads. I can only think of one or two times where a non-Disabled ally has been on the record, verbally acknowledging how reprehensible it is that people like them, kill people like us, and they rarely see actual justice. And I’m not going to lie, but it hurts. Your wide eyes and head shakes don’t change the system that values your life over ours so you can just keep them and take them home with you at the end of the day. I don’t want to see them again. And I know what happens when I’m not in the room, an inevitable conversation about how “so and so’s cousin has ______ and it’s so hard on their mom. I can’t imagine what a burden it is.” I know this, because I’ve walked in on it.

The lives of disabled people matter regardless of what they contribute to society. Their lives matter if they communicate in a way normative culture finds appropriate or acceptable, and they still matter if they don’t. They matter if they need 24/7 care and someone to bathe and feed them. They matter whether or not they can read. We are continually finding ourselves having to defend the right to access society for ALL our folks regardless of their disability. Nondisabled folks create registries, build gated communities, surveil the healthcare of folks using Medicaid, as ways to treat people with certain types of disabilities as objects, not people you can plug into a system, use as an outcome.

Our community lies bleeding and you want to talk about services. The society we live in repeatedly justifies the homicide of disabled people with either a guilt-benefit analysis or a cost-benefit one. “Karen couldn’t take her normal kids to Disneyland before Billy’s aide was so expensive.” Is our existence so uncomfortable to you that you can’t take a moment to mourn with our community before you want to reduce us to a number in a spreadsheet? To a budget cut or a political talking point.

The death of disabled people at the hands of loved ones is not a “mercy killing”-it’s a hate crime. It’s filicide.

I tell the story of Hassani Campbell, a five year old little boy from Oakland, California who supposedly ran away from his aunt’s boyfriend while in a shoe store. He lived with with cerebral palsy and used crutches and leg braces, and yet we are to believe that this child outpaced a grown man. Folks in the neighborhood reported hearing the aunt’s boyfriend repeatedly talk about the burden of raising Hassani and when interviewed by police, the boyfriend failed a polygraph. However lack of any additional evidence (a body) resulted in the police dropping charges and the case remaining unsolved. He went missing shortly before I was pregnant with my son, so I spent much of my first trimester insomnia researching his case and scouring the internet for clues. While we may not know if Hassani’s family directly killed him, they certainly didn’t treat him in a way that any child should be treated.

This year is particularly hard because many of us in the disability community are morning the loss of Carrie Ann Lucas. An activist, a lawyer, and a mom with multiple disabilities. Of four kids with disabilities. Kids who she adopted and fought for, for the entirety of her adult life. We watch folks outside of our space throw away our kids. Bully them in the school system till they kill themselves. Rape and impregnate them in nursing homes. Turn them into inspiration porn for working a job for 40+ years making submininum wage. And here was an incredible woman, who loved her disabled children with everything she had. For those of us who are disabled parents, she was an incredible role model. For nondisabled parents, she should also be a role model.

But the media doesn’t cover parents who make it work. Solutions don’t get ratings, boogeymen do. So it covers the murders. A majority of times it puts the parent or caregiver on a pedestal, and behaves in such a way that the child is an object and not a person. Often there is no descriptor of the victim, no discussion of what kind of person they were, their likes or dislikes, how their friends, family or neighbors are reacting to their death. There have been articles where the victim is never mentioned by name, and it gives the impression of this faceless, personality-less Auton (see: Doctor Who Series 9, Episode 1 “Rose”) I’ve yet to read an initial article about filicide that includes interviews with the disability community, whether it be a local ARC chapter, a center for independent living, or someone who knew them from Best Buddies. Their humanity is entirely erased in their death, as they were not viewed as human beings in their life.

This has broader implications for public policy decisions impacting the disability community but that’s for a future piece. For example, in London a play called “All In A Row” is receiving appropriate criticism for substituting a real live person playing an Autistic character with a scary ass looking puppet. Critics from the disability community like Dylan Greene and Shawn May and others have compiled their critiques here, and have talked about how media portrayals have real life implications for how disabled (and in the case of #puppetgate, Autistic) people are treated both by society and by the law.

So what can YOU do?

Question what you read, what you see, what you learn about these cases. As yourself, why is the death of this person being viewed as charity versus filicide? Tweet reporters and ask them why they’re not talking to the disability community. When you hear people talk about these stories around the water cooler or the charging station, ask your colleagues why the story centers on the parent/caregiver versus the disabled person who was the victim, as is usually done in the reporting of most major crimes. We need you, we need both progressives and conservatives to speak out about this. This isn’t a partisan issue, this is a human issue.

Listen to Disabled people. Listen to the communities impacted, Autistic folks, people who use augmentative communication devices, people with mental health disabilities! Retweet their writings on this. Center their voices in the narrative.

Join a vigil in your community. And read aloud a name. Feel how it feels coming out of your mouth. Does it catch in your throat. Is there some kind of connection you feel? Remember, for some of the victims, this may be the only memorial they have. And that breaks my heart, as an activist, a grown-up disabled child, and a parent of disabled children. And every year the list gets longer. And to be honest, we don’t even know how many have died because the names we gather are from word of mouth, media reports, and the random conviction of the perpetrator.

Visit the online archive.

Support organizations like the Autistic Self-Advocacy Network, the Autistic Women’s and Non-Binary Network.

Take some time to read what’s being shared on #DDOM2019 and make sure to RT actual-disabled people.



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Rebecca Cokley

Rebecca Cokley


Rebecca Cokley is a philantropic buffalo, 3 x Obama Appointee, writer, pundit, & activist who doesn’t believe anyone should wait over 30 yrs for civil rights.